Sunday, 21 May 2017

Trip!

I finally got my trip cancellation insurance money back! What a huge relief is it to not have to think about it anymore.

You're probably wondering "what trip?" My planned Aruba trip in November 2015. The one I had to cancel because I was in the hospital being diagnosed with cancer. The one that was suppose to be my one-year post-transplant celebration. The trip that the rest of my family still went on without me because it seemed ridiculous to ruin their vacation just because I was stuck in the hospital. That one.

It's been a long fight with the company that I wasn't expecting because when I had to cancel my trip to Spain in 2013 due to hospitalization, I had zero issues. I sent in my paperwork and receipts and got my money back in 6-8 weeks. No questions and one form for the doctor to fill out. And that was related to my pre-existing condition so I was expecting a fight. This time was very, very different.

The day I was given my diagnosis and was told not to go to Aruba, Isaiah called United (United really is the worst but it was the cheapest) to set up the claim. We thought if we didn't delay, it would be easier. United sent the information to their subsidiary Allianz, who told him where to send the appropriate paperwork. We had that paperwork filled out by a doctor and waited two months to find out the claim was rejected because they said my doctor's visit several months before the trip counted as "active treatment."

I was so upset. My doctor visits are regular and there are often slight medication changes but my doctor had still said I was okay to travel. I made Isaiah deal with them because every time I would get on the phone to explain to the representative that my cancer was not related to my general check-up, I would start crying. I'm one of those people who cry frustration-tears and it didn't help that I was also in the middle of chemo so was incredibly emotional at the time. I didn't have any emotional energy to fight with an insurance company.

We appealed their decisions with more paperwork from a different doctor. Waited many months. Denied again.

Appealed their decision again with even more paperwork from the doctor. Waited many more months. Denied again.

Six months ago my doctor wrote a even stronger letter to the company and we weren't immediately denied, they simply requested more information. They asked for my medical file to be mailed to them. My medical file. Isaiah called and asked "her entire medical file?!" The man clarified that they just wanted the information from the initial hospitalization when my trip was cancelled.

I filed a request to the medical records section of the hospital for all my paperwork from my November-December admission in 2015. The woman asked if I wanted to have it printed and mailed to me. The cost was simply 40$ for the first 100 pages plus 0.25 cents per additional page plus shipping. The file was over 1000 pages.

The man from Allianz said paper copy was better but they would accept electronic "if we must." At over 250$ and 12% of a tree, I decided "we must email." Also, we have the technology, why do they make things so much more difficult? (I know the answer to that question) I opted for the cheaper option of having it mailed to me on a CD as a PDF instead. Once it showed up, Isaiah decrypted it and emailed the file to the company.

We waited another few months and I received an email saying the medical staff had overturned my initial rejection. I finally have a cheque in my hands (it's in the bank). What a relief. The drama is over.

And so I've booked a trip to Vancouver!!! Yay!!!!! In less than a month Amy and I will be getting on a plane and zooming off to find some mountains and killer whales. I'm unbelievably excited. I love traveling and exploring new places so much. It gives me so much energy. Leaving Atlantic Canada and not going to Toronto for the first time in 5 years!

I picked Vancouver for my first trip because:
1) I've wanted to go back and explore more since I was there cycling with David 9(!) years ago
2) I want to see some killer whales since the last ones I saw were in 1997 when we were there as a family
3) I want to hike all over the mountains
4) it's still in Canada so I have a safety net with good hospitals nearby if something goes wrong.

Amy and I have visited so many places together that being able to travel together again is the final confirmation that I'm healthy. After sitting in the hospital getting texts while she went to London, Germany, and Aruba without me, planning trips together makes me feel like my pre-transplant healthy self. How else to explain it than to say "I'm unbelievably excitement" about a million times.

Amy and Alley Adventure Again!

Without travel insurance for me this time, because if it took a year and half to get it back for getting cancer randomly, I'm definitely not getting it back now.

Sunday, 14 May 2017

Hiking

Happy Mother's Day! We went on our annual Mother's Day hike along the Dobson trail. I say annual hike but really I haven't been on it for many, many years. It was really nice, the bugs were pretty terrible but we moved faster than them so that was fine.  Mom picked May flowers and Isaiah picked mushrooms to practice identifying with his new mushroom book. He was looking only, the mushrooms did not go into the supper's risotto.

I'm on the end of a 10 day steroid boost to try and eliminate my annoying cough. The Easter cold is still haunting me but hopefully this will fix it. My cough is getting better but I still have deep coughing fits every once in awhile. It's a fun reminder of how long I take to recover from a mild head cold and how careful I need to be around people.

The first few days of extra steroids, I couldn't focus on much but that's gotten better. I still get a boost of energy in the afternoon and am ravenously hungry most of the time. Hiking yesterday helped burn off some of that energy.

It was our first hike of the year and it felt nice to be in the woods again. Hopefully the first of many hikes to happen this summer!


Sunday, 7 May 2017

Cancer update: Still no cancer!

I had my one year hematology appointment and *drum roll* I'm still cancer-free! Woohoo!!!!

The doctor was fine with the lack of contrast dye on the CT scan so I don't have to go through all the stabbing until the next scan in a year. She called the lung spot from my last scan a "node" and not scarring like I had previously thought but didn't say that it had been cancerous. I assume it wasn't or else they would be doing more frequent scans. Either way, all the leftover little spots are gone and the big spot is practically gone now so that's all excellent news.

We went up to Halifax early so we could celebrate Isaiah's 34th birthday on Tuesday with a delicious sushi supper. Then we spent most of Wednesday wandering around Halifax which we usually don't have time to do. It was great.

Now that all the doctor appointments are over for another few months, Isaiah is starting the job applying/interview process which is stressful for both of us. But mostly for him. I'm trying to just be supportive by asking him a million practice interview questions. He's loving it.

Halifax!

Sunday, 30 April 2017

Transplant Trot!

I finished the Transplant Trot! And I didn't even throw up at the end! I would not recommend doing a run (I say run but really I run 1 min, walk 1 min) while getting over a cold. Or I should've taken a sinus medication because my nose got very runny at the halfway mark. It was uncomfortable. I also thought I was no longer congested but *surprise!* I was.

At about 3km, I thought I was done. I decided I would wait until Mom and Dad caught up with me and then could just walk the rest of the way with them. But then I jogged one more minute and somehow I kept going. The way back was more downhill (although it was pretty much flat) with a tailwind so that did help a bit. There was a woman in a pink t-shirt that I really wanted to finish ahead of. I would pass her during my one minute run and then she would pass me when I walked. It was a fun game for both of us.

I finished in 38:30 minutes! I made my goal! Yay!

My legs were throbbing last night. It shouldn't be surprising that preparing on the treadmill and the indoor rubberized walking track did not translate well to an semi-paved outdoor trail along the river. Now I never have to exercise again! Just joking, I'll give myself a few days off and then keep going because it's too good for my lungs to be able to stop now.

Isaiah ran the 10km and didn't end up walking it all. He was feeling quite ill on Thursday and hadn't trained as much as he had planned so he didn't have a time goal in mind. He just wanted to finish. He says he'll be sticking to 5km runs in the future.

We had so much energy at the start.
Just after the turn around spot. I am not a happy jogger.
Finished! (Posed picture once I caught my breath again)
Mom and Dad power-walked the 5km.
Amy was given a medal for cheering us on.
Isaiah is done! And ignores the man handing out medals.
We're ready for a nap!

Sunday, 23 April 2017

CF clinic

It's prime cold season at the Watson/Jacques household. I'm finally at the tail end of my cold (hopefully) while Isaiah has started sniffling yesterday and is drinking liters of Cold Be Gone tea in an attempt to prevent it from become more. His colds never seem to last as long as mine and involve fewer naps so I'm not as sympathetic as I should be.

It was fairly good time to get an infection for me (as much as that's possible) because I had my CF clinic last Wednesday and they were able to test my lung function (down slightly) and listen to my lungs (clear). The doctor wasn't overly concerned but put me on a 10 day course of antibiotics just to play it safe. Sometimes I think I'm solely responsible for the antibiotic resistance problem.

The dietitian made a plan to try and fix my wonky sugars but wanted more numbers so I've been intensely recording everything I eat with my sugars for the past week. It'll help her try to recognize patterns even if I can't see them. Shockingly, I was quite high after I eating a Cadbury cream egg...perhaps the feedback will be to eat less pure sugar. Now that my weight is the highest it's ever been, I no longer have the "I have to gain weight" reason to eat all the candy. It's quite refreshing not to have to worry about my diet but it does mean fewer cookies.

I had a CT scan last week and the doctor said the early report showed no new nodules and shrinking in the one spot that had been on my lungs. I'll get the full report at my hematology appointment in May but everything looks great right now!

That stupid CT scan was so terrible. It was supposed to be done with the dye contrast which is usually not a problem. It becomes a problem when no one can get a IV into my arm so it can't be injected. Usually before an IV (when I know it's coming) I'll try to hydrate as much as possible to make my veins pop a bit and the process go smoother. However, with this scan I wasn't suppose to eat or drink for 4 hours before and seeing as it was at 830am, that meant no liquids for me that morning.

My veins were not happy. The nurses were not happy. The doctor they called in for backup with his ultrasound machine was not happy. Combined they tried 14 times to get an IV in. 14! Not just 14 regular stabs either. Most of them were the ones where they miss, dig around for a bit, think they get it, try to flush it, and nope. It was terrible. They kept asking me how the nurses got them in back in Dec when I was in emerg for Poopmas. I suggested maybe getting an emerg nurse to help but apparently they were all busy.

The doctor suggested he could put in a central line in my neck but that seemed like massive overkill for a CT scan. After all that, they did the scan without dye which meant not as much will show on the report. I was worried I would have to go back in a few weeks for a repeat but my CF doctor didn't think it would be necessary. I really hope she's right. It was slightly traumatic. I came out of the room all bandaged and bruised and yelled at the waiting Isaiah that they stabbed me 14 times. He just shrugged and said "Seems about right." No. Not the reaction I wanted. He's become immune to my "they stabbed me many times" stories. People with good veins just don't understand.

Now I just need to get over the end of this cold because the Transplant Trot is in less than a week and I really need to jog outside a few more times before it happens. 5 km jog (trot?)! Eeek! 

Tuesday, 18 April 2017

Happy Easter!

Happy Easter! I know it's a little late but I hope everyone had a great long weekend. We drove to Halifax to visit friends and then to my parents to enjoy a giant Easter meal. It was a busy weekend.

Now we're home for a day before I have to drive to Halifax tomorrow for a CF clinic. Just a regular check-up so I don't anticipate any issues. It'll be nice to talk to the dietitian and see if she has any suggestions for dealing with my sugars. I've been making a detailed report of my food intake and sugar levels to try and explain my sugar crashes but since I started recording everything intensely, of course everything has been fine.

I woke up with a bit of a cough today which I'm hoping will either go away on its own or they can fix tomorrow. Perhaps if I drink a ton of tea with honey it'll get better. I tried to be so careful around the children over the weekend but since they're basically little balls of germs, it's hard to know if I was cautious enough.

Sunday, 9 April 2017

Quiet week

Well, I've officially run out of things to blog about. My life has become normal and boring which is wonderful but not very interesting to blog about. I've put my cross country skis away and had my last skate at the arena last Tuesday before they take out the ice and put up the basketball nets. It's always an awkward time between seasons but it doesn't look like I'll have to wait too long to go biking or be able to jog outside.

My energy level has been really good all winter and so far I've managed to avoid getting a cold or infection. My working one day a week has not seemed to impact that too much. I do still find I need 8 to 10 hours of sleep a night though in order to function during the day. I say this having not slept well last night and have been zombie-like all day. I can't explain why I need so much sleep, if it's my medication or something with the transplant but I need my sleep. I always have but before I figured it was because I struggled so much to breathe and when I did sleep, it was restlessly which it meant I needed more time overall.

It's a weird thing in our culture where we like to brag about how little sleep we got as though it's an accomplishment to sleep only 4 hours a night. I will never win the "I barely slept last night" contest and will never mutter "I'll sleep when I'm dead". No thanks, I'll sleep now. I clearly need a lot of it as I can sleep soundly from 11pm to 9am most nights. I'm not concerned about it, I just need to keep it in mind when I think about possibly working more than one day a week.

I'm not planning on finding another job or expanding hours just yet. I want to make sure my one year post-chemo check-up is clear. Also, Isaiah finishes his course in May and then he's hoping to get a full time job somewhere so we may end up moving in June. He's applying everywhere and although I would like to stay in NS, since he put everything on hold and followed me around for a few years, I can't really complain if he gets a job out of province. I'll just need to look at the health care coverage before moving anywhere. I don't think any other province will be as good as NS but I do need them to at least cover my anti-rejection and digestive medication.

Sunday, 2 April 2017

Living with CF related diabetes

This past week has been a tough one for managing my diabetes. And I have no idea why, which is the most frustrating part. It's strange how after everything I've been though with the transplant and cancer, the thing that affects me the most on a day-to-day basis is my diabetes. A disease I didn't fully understand the level of frustrating it causes until I had to start taking insulin.

Just a quick refresher, CF related diabetes (CFRD) is a mix between type 1 and type 2. It's becoming more common as people with CF are living longer and the years of mucous build-up causes scarring on the pancreas, causing it to produce less or no insulin (like type 1). Also, the amount of steroids people with CF take may cause them to become resistant to insulin (like type 2). 

Some people can control their CFRD through diet and exercise but most people (like me) are required to take insulin. It's hard to cut out all sugar and carbs from a CF diet due to the struggle to maintain a healthy weight. While that's easier for me since the transplant as prednisone has increased my appetite 100%, I still can't cut out all the easy calories like white bread and pasta just yet.

Even if I did change my diet, I would still have high sugars as a lot of it is caused by the prednisone I take to prevent rejection. While I was diagnosed with CFRD before the transplant, it didn't kick into high gear until afterward with the new medication. I'm not sure if I would be considered to have medication-induced diabetes since the steroid is mostly the reason for my sugars. I was told it would improve with my dose being lowered but that hasn't made a significant difference. I haven't asked anyone for the official label because it really doesn't matter. Either way, I have to stab myself multiple times a day.

I take a long acting insulin that is designed to peak at the same time as the increased effect from the prednisone, around 7-8 hours after I take it. I also take a short acting insulin before every meal that peaks 2 hours after injection to align with digestion. All together, 4 injections a day plus multiple pokes to check my sugar levels. The injections still hurt sometimes. My dietitian claimed they were "no worse than a mosquito bite" but she lied. My stomach and thighs are covered with tiny bruises and bumps from the injections even though I rotate the injection site.

The reason this past week has been so hard is that I keep getting sugar crashes (hypoglycemic, to be technical). I find it strange how I can go for weeks without a single crash and then have three in one week. There doesn't seem to be any pattern which is the most frustrating part. The only time the crashes make sense is if I take too much short-term insulin before a meal and then don't eat enough carbs to balance it out. I try to adjust my insulin as much as possible based on the meal but I sometimes get it wrong.

Exercise also lowers blood sugar and on the days that I know I'll be more active, I cut back on my long acting insulin to avoid a 4pm crash. However, this doesn't always work as I can still sometimes crash out a few hours after exercise. Or during exercise. Or at 3 a.m. I can not figure it out.

I'm lucky that I get physical symptoms from low sugars which doesn't happen to everyone. A lot of people with type 1 diabetes have had so many crashes that they become "hypoglycemic unaware" which means that their bodies have stopped giving signals when the blood sugar drops. Thankfully my body still gives me a warning instead of just passing out or slipping into a coma. If I'm sleeping I'll wake up with sweats and feel faint but some people just lose consciousness with no warning. That's when having one of the dogs trained to smell low blood sugar would be helpful.

When I'm crashing out, I go to the kitchen where I devour everything in sight. The diabetes manual I was given told me to drink a small cup of juice and then check my levels after 15 minutes. That sounds great but at that moment, I need to have more than a small cup of juice. I want to eat everything and find it very hard to stop. I know rationally that as soon as the sugar from the juice or cookie brings my level back up, I'll feel fine and I don't need to eat the entire bag of trail mix or half of the cake but its hard to translate that to my body. It's like my body is in panic mode and thinks every single possible calorie is required to get through the next 5 minutes. After about 10 minutes, I stop sweating and start feeling normal again. I'll check my sugars again to make sure everything is back to normal and then carry on with my day (or sleeping).

I'm very thankful at how good the technology for managing diabetes is now. If I wanted, I could get a blood sugar meter that texted me (and my family) the results (although those ones aren't covered by my drug plan). The insulin pens are ridiculously easy to use compared to syringes (although more expensive if not covered) and pumps are becoming smaller and easier for those with Type 1 diabetes.

I've obliviously only had experience with the current technology but when talking to older nurses or doctors, they go on about how much easier everything is now for patients which makes compliance that much better. Compliance and management is so important with diabetes because uncontrolled sugars can cause heart problems, blindness, nerve damage, and slow to heal infections. All of those things can happen with controlled sugars too but is less likely.

It's hard to have a disease where I try to manage it perfectly and do everything by doctor's orders and there are still moments when I have a blood sugar of 15 (high) or 3.5 (low). It's like lung failure with CF where you do everything right but still decline. Only diabetes provides more immediate feedback every time I get the insulin dose wrong for some random unknown reason. It's terrible.

The end.

Sunday, 26 March 2017

Transplant Trot in one month!

I realized this morning while jogging on the treadmill that the Transplant Trot is in a month! Eeek! My knee is feeling significantly better than last month so I've been able to crosscountry ski and jog on the treadmill once again. I haven't been out downhill skiing but mostly because I'm not a fan of downhill skiing on soft spring snow. It's a lot more work and much harder on the knees.

On the treadmill I'm managing to do 5km in 45 minutes (with many walking breaks). I know that once I have to jog outside, my time will be much worse since the treadmill is much much easier than actual jogging.

I wasn't going to set a time goal for myself and just "have fun" but let's be honest, of course I'll have a goal. I need something to compete for. I'm thinking that 40-45 minutes is a reasonable goal for my 5km. I know that's slower than average time (according to google) but I do not move very fast.
I'm thinking 40 minutes because I have this idea that I'll be much more pumped up and motivated on the day of which should automatically knock a few minutes off my time (because that's how it works, right?).

Anyway, if you want to join me or just cheer me on to see if I can do it (and Isaiah doing the 10km), the run is at the Moncton Press Club on April 29th at 9:30 (run starts at 10). More info here.

Also, if you're doing your taxes and realizing you should've donated more to charity and don't want to make the same mistake next year, everyone in my family is doing the Great Strides Walk to Make CF History in May! We would all love someone to sponsor us! You can do that here if you feel so inclined.

Monday, 20 March 2017

Canadians with CF live longer!

A study came out this week that showed Canadians with CF live on average 10 years longer than Americans with CF, 50.9 years vs 40.6. The researchers think there are three main factors between the countries that cause the difference:

1) Canadian CF doctors were the first to bring in a high-fat, high-protein diet in the 70s that helped children with CF absorb more calories and were therefor not a malnourished.
2) The better Canadian access to health care. Canadian patients are more likely to see their doctor if something is wrong and not have problems getting medication.
3) All Canadians are more likely to get a transplant when needed (probably also related to not having to worry about the cost of treatment or hospitalization), which increases the lifespan of people with CF.

I think the access to health care would make such a big difference. It would be terrifying to be worried anytime I thought something was wrong because I couldn't afford a check-up or x-ray. The cost would prevent many people from not seeking treatment immediately when they had a flare up.

It's a luxury not to have to worry about the cost of a doctor's appointment or a lung transplant (besides the extra expenses of living in Toronto). As a result, I'm more likely to call the doctor anytime I feel something is wrong. Being able to get early treatment makes a huge difference since treating infections early is important with CF.

There is one thing that the people on the facebook lung transplant group I'm part of says that the article got wrong.

The article said the American system of classifying who gets priority for lung transplants is a disadvantage for people with CF. However, the person in the group said that the new system actually helps patients with CF move up on the list since it now looks at how patients progress while listed  instead of how they were when initally listed. If that is the case, Americans with CF should be now getting more lung transplants which would narrow the life expectancy gap between countries.

I know some people on social media were touting the study of Canadians living longer to cheer how great Canada is but I think it shows more how the US health care system is failing Americans who are chronically ill. It's sad that the fluke of where you're born determines how long you live. I mean, it does for everyone with regards to access to clean water, food, and war. But to have such a difference between two developed countries is surprising. Although the US medical system is so different to Canadas that I wonder how life expectancy would compare to a country with a similar or better health care system, like the UK or Sweden.

Sunday, 12 March 2017

Cooking: Peanut Butter and Jam Cookies

Now that the weather has turned cold again we're back to eating soup and drinking tea to stay warm. And with tea comes cookies! 

Today I made one of my favorite cookies (I say that about most cookies), peanut butter and jam! They're like eating a pb&j sandwich but without the bread and with more sugar. Hard to go wrong. It's also a great way to use up all the jam we made last summer and haven't eaten. I'm not sure where we got the idea that we needed 20 bottles of jam for the two of us. Over Christmas I made chocolate jam cookies and they were a bit weird so from now on, I'm sticking with peanut butter.

Recipe from One Smart Cookie.

3/4 c white sugar
3/4 c brown sugar
3/4 c peanut butter
2 egg whites
1/2 c flour
pinch salt
jam (the recipe says 1/4 cup but I use more than that)

Beat together sugar, peanut butter, and egg whites.
When smooth add flour and salt and mix by hand until smooth.
Roll into 1" balls, place 1" apart on cookie sheet, and press a thumbprint into the middle.
Fill the thumbprint with jam, be generous as they really spread when cooked.
Bake at 375 for 12-15 minutes until brown on the edges.
Let them sit on the cookie sheet for a few minutes before transferring to a cooling rack (otherwise they'll break in pieces and then you'll have to eat them all to hide the evidence).

I've used strawberry, apple jelly, and ground cherry jam in the past. It's hard to go wrong but I think apple jelly is my all time favorite so far. Enjoy with a cup of tea or glass of milk!

Yum!
My afternoon chai latte and cookies. Let's just pretend I stopped at three. My poor sugars.

Sunday, 5 March 2017

Book: When Breath Becomes Air

I read Paul Kalanithi's beautiful book this week When Breath Becomes Air. I was hesitant about reading it for a long time because I wasn't sure if I would find it too close to home to read about someone dying from cancer. But a fellow transplantee said I should give it a chance and because it's just a small book, I did.

Kalanithi writes about how his journey to become a neurosurgeon started with him wanting to learn more about death. After finishing a Masters in philosophy he decided the way to understand life and death was to study the brain intimately. He became a top neurosurgeon and when he was diagnosed with stage IV lung cancer, he, remarkably still preformed surgeries until he no longer had the energy. The book is not a descriptive play by play of what it's like to get cancer but more of a reflective journey of what it means to live and die well. He talked about finding meaning and doing things that were important to him in every step of his life and death.

Besides learning about how intense you need to be to become a neurosurgeon, it left me thinking about death. Something I haven't thought about much since ending chemo because it seems when you're healthy, it's not something you think about. Realistically, it's something I haven't had to confront since my transplant. Not to underplay how scary cancer and chemotherapy were but at no time did I have that overwhelming feeling that I might die soon (except during some of the chemo fevers but that only lasted a day or two). While waiting for a lung transplant, it was more prevalent as there was the real fear that if I didn't get a transplant, I would die. Or that I might die during the transplant. And when I went into lung failure right before the transplant, it was very imminent.

Now that I'm healthy, it's just not on my mind as often. This book brought me back to thinking about what it means to have a life well lived. Kalanithi talks about how much more he wanted to do with his life, as a top neurosurgeon who saved a ton of lives. It makes my life of saving zero lives and cutting zero tumours out of anyone's brain seem small in comparison.

I have no answers about what defines a meaningful life but obviously we don't all have to be neurosurgeons to make an impact on the world. I think just trying to leave the world a tiny bit better than when you came into it is a fairly good goal. And to be a positive energy to those you encounter seems like a good start. It doesn't have to be anything grand. 

I would recommend to read the book if you have the chance (your local library probably has a copy!) or listen about it on CBC's White Coat Black Art. 

Sunday, 26 February 2017

No cancer!

I don't have cancer! Woohoo! (I may just start yelling that at people everyday. It's pretty great to not have cancer.)

My appointment on Tuesday with the hematologist was remarkably quick. I saw the doctor at 12:34 (appointment scheduled for 12:30) which has to be some type of record. She asked all the usual, "How have you been feeling?" questions and laughed about my Poopmas story from December. She poked around a bit to make sure I didn't have any lumps, listened to my lungs, and I was sent on my way.

In three months I'll have a CT scan which will show a bit more than the blood work I've been doing. And then the visits will be every four months instead of three! The doctor said during this visit that she would discharge me after 5 years if all stays negative. Before she said she would follow me forever so I'm not sure what changed. Maybe since I'm being followed by other doctors and have semi-frequent scans she's confident they'll pick something up if the cancer returns.

Since returning from Halifax, I've had a low-key week, still trying to stay off my knee. It is getting slowly better, as in, I can now walk on it without pain. Hopefully by the time I'm feeling 100%, they'll be some fresh snow to cross country ski on. The snow we have now is looking quite sad.

Sunday, 19 February 2017

I hope everyone has dug out of their house by now! We've gotten so much snow in such a short period of time here in the Maritimes. Based on conversations at the library, I seemed to be one of the few people in Springhill enjoying the storms. It helps that we don't have to shovel our driveway or go anywhere on the terrible roads.

I went out snowshoeing and cross country skiing a few times on the trails around here. It's really nice to be able to walk from the house and get on the trails.
I think I could ski to Amherst if I had that much energy.
And I've been downhill skiing several times this winter at Wentworth. It was a bi icy before this snow hit but now it's gorgeous. I went out last Wednesday while Isaiah snowshoed up the hill (on a snowshoe trail, not up the ski trails). The conditions were amazing! There was so much fresh snow and while only some of the trails were groomed, I stuck to those ones and it was wonderful.

I was zipping along one of the trails and was thinking about avoiding the snowboarded in front of me, the next thing I knew, I was sliding down the mountain on my face. I must've hit a soft spot or some moguls, I'm not even sure. What I do know is that I landed on my knees because I could barely stand up. I somehow made it down the rest of the trail but as soon as I got inside, I knew that was it. I've been icing my knees since then and they're slowly healing but it'll be awhile before I get to enjoy the snow again.
It was such a beautiful morning.
Now this is all I can do.
In the meantime, I had my monthly pft's done last week and my fev1 is 70%, so the same as before. On the new requisition the doctor only requested my fev1 and not the other tests they had been doing. So now it's less than a 5 minute visit.

Now I'm off to Halifax for my 9 month post-chemo check up on Tuesday. I got my bloodwork drawn on Friday and that's all they want for this appointment. I'm sure she'll check for lumps but other than that, it's kind of a waste of time. At least it gives me an excuse to go to Halifax and visit some friends. We were planning on skating on the Oval but seeing as it hurts to stand up for too long those plans have been axed. Maybe a coffee shop and some board games instead.

Sunday, 12 February 2017

Art!

Part of my New Year's plans for this year was to create more arty things each week and not worry so much about the outcome. And so far it's going well! I've spent more time being creative and doing the activities I always say I should be doing but put off. That's what New Year's resolutions are all about, aren't they?

I went on a bit of a sewing paper-piecing kick and sewed some silly things from patterns I found online. I'll square them off and turn them into cards eventually, that part just isn't as fun. I'm also learning that it's hard to get eyes even on these things.


I've also been drawing more. I got a few kids "How to Draw" books from the library and have been having fun drawing nonsense monsters, bugs, and dinosaurs. The lady bug is a bit creepy looking.

I also spent an afternoon playing with paint and dreaming of zooming along on my bike.

Hopefully more to come!

Sunday, 5 February 2017

Living without lungs

At work on Thursday, several people asked me "Did you hear about the woman who lived without lungs for 6 days?!?!" Then we had a great chat about organ donation and the amazing-ness of science.

If you don't know what I'm talking about, here a summary of the story as reported by UHN:
"Melissa, then 32, was brought into TGH's Medical Surgical Intensive Care Unit (MSICU) in early April 2016, sedated and on a ventilator to help her laboured breathing. For the past three years, Melissa, who has cystic fibrosis, had been prescribed antibiotics to fight off increasingly frequent chest infections. 

As Dr. Niall Ferguson, Head of Critical Care Medicine at UHN and Mount Sinai Hospital, describes it, the influenza "tipped her over the edge into respiratory failure. She got into a spiral from which her lungs were not going to recover. Her only hope of recovery was a lung transplant.


...A team of 13 operating room staff, including three thoracic surgeons – Drs. Cypel, Keshavjee and Waddell - removed Melissa's lungs, one at a time, in a nine-hour procedure. Her lungs had become so engorged with mucous and pus that they were as hard as footballs, recalls Dr. Keshavjee. "Technically, it was difficult to get them out of her chest."  

But within hours of removing her lungs, Melissa improved dramatically. She did not need blood pressure medication, and most of her organs began to improve.

To keep Melissa alive, she was placed on the most sophisticated support possible for her heart and lungs. Two external life support circuits were connected to her heart via tubes placed through her chest.

A Novalung device, a small portable artificial lung, was connected by arteries and veins to her heart to function as the missing lungs. Working with the pumping heart, the device added oxygen to her blood, removed carbon dioxide, while helping to maintain continuous blood flow.

At the same time, another external device, extracorporeal membrane oxygenation (ECMO), which has an external pump, circuit and oxygenator for the gas exchange of oxygen and carbon dioxide, also helped to circulate oxygen-rich blood throughout her body. 


Six days later, a pair of donor lungs became available and Melissa was stable enough to receive a lung transplant in late April 2016.

"The transplant procedure was not complicated because half of it was done already," noted Dr. Cypel, "Her new lungs functioned beautifully and inflated easily. Perfect."

Did you catch the description of the lungs when they came out?  "...so engorged with mucous and pus that they were as hard as footballs." I think I just threw up a bit. Cystic fibrosis is the worst. We need  medication so our lungs didn't get to the point where they're filled with mucous and pus and hard as footballs. Something to think about while you watch the Super Bowl today.
 
While research for CF may not be at that point, it is amazing what medical advances we have made. Yay science and research funding! And hurray for doctors and families willing to take risks! But maybe it's not such a risk when there are literally no other options. When you or your family member are only a few hours from dying, I think you take whatever the team is willing to suggest. But it must've been so confusing for the family at first. "You want to just take out her lungs with no replacement?"

If your life is in the hands of a doctor, you want those doctors. At least one of them on that team also did my transplant which I was told was quite technical and required skill. I saw a few of the other doctors post-transplant in the hospital and clinic. They are some of the best.

Melissa's recovery after the transplant sounded much harder than mine after she spent 6 days in a coma with no lungs. She didn't complain about it in the interview but I read in one article that she was in the hospital for several months afterward. Her body must've felt so beat up. Plus having to wean off the ECMO machine must have been hard.

I was on the ECMO machine for a few days post-transplant to help my body get used to my new lungs and Amy kept harassing the doctors to remove it. It's important not be on it too long because the longer you're on it, the harder it is to remove. Our bodies are lazy and if a machine is going to exchange carbon dioxide and oxygen with no effort on our part, that's very easy to get accustomed to. The chances of being able to successfully wean off it are between 50 -70% (studies vary). 50% is not high!


The real key to this story is that 6 days after Melissa's lungs were removed, a set of lungs that matched her became available. The doctors don't know how long she could've remained on the machines but it wasn't indefinitely. At some point she needed someone to be an organ donor so she could live. And it happened but it very easily could not have. Unfortunately, people still die all the time while waiting for organs. I hope everyone reading the articles got the lesson to be an organ donor.

All in all, a great medical success story. 


For more information about Melissa and the surgery:

CBC's As It Happens interview 
CBC News article
Everything you ever wanted to know about the ECMO

Sunday, 29 January 2017

Happy 10 years, Isaiah!

This weekend is approximately Isaiah and I's 10 year anniversary and instead of the traditional tin, we're getting the car a new set of brakes. We're romantic that way.

I don't talk a lot about our relationship but we've been through quite a bit over the past 10 years. If a couple can stay together through the stress of a transplant and cancer, I think it's a good set up for the rest of their relationship. If nothing else, we have checked the "in sickness and in health" part off the list.

I can't imagine having gone through all my medical nonsense without him around. If he had a fear or dislike of hospitals at the start of our relationship, he never let it show or quickly got over it. He sat by my side during countless hospital admissions, brought me home-cooked meals, and took my 2 a.m. panic attack phone calls.

We may not always have the most romantic relationship but having someone around who knows me well enough to leave me alone when I'm being injected in the spine with needles is exactly the relationship I want. Something the nurse should've picked up on when she saw him sitting in the corner instead of hovering over me and kept rubbing my arm for "comfort."

Not to say it's all been easy, of course we had issues figuring out the changes in our relationship when he had to take on more and more of a caregiver role when I got progressively more sick. It's hard to find a balance between being a partner and being a caregiver when one person is chronically ill. I think we did a good job but it took a lot of communication about what each of us needed at that time.

I was so scared he was going to burn out that I kept harassing him about it to the point where I probably stressed him out looking for signs of depression. Studies have found that caregivers tend to have increased rates of depression, ptsd, and increased isolation when their loved one is hospitalized, even if the person gets better. A reminder that even if you're looking after someone, you need to look after yourself first. As the airlines always reminds everyone: put on your own oxygen mask before assisting the person beside you.

A recent article in the Canadian Medical Association Journal talked about the importance of caregiver supports and preventing caregiver burnout. They quoted a study from the New England Journal of Medicine that concluded elderly caregivers have an increased 3.7% chance of dying in the year after their spouses are hospitalized. Isaiah isn't elderly so I wasn't worried he was going to die, just that he may burn out and need to run away for awhile.

It's stressful to be the caregiver of someone who is chronically ill. It's also hard to need someone to take care of you. It's especially hard when the person taking care of you didn't exactly sign up for that role. Isaiah didn't go into this relationship 10 years ago thinking he would become proficient at medical lingo, cancer talk, and learning how to navigate hospitals. I had a lot of times where I second guessed our relationship and wondered if he stuck around just so he wasn't the jerk who ran away from a sick partner. That doubt puts stress on the relationship that can be hard to deal with especially when other issues may seem more pressing.

I think the lesson is that relationships are hard, no matter what you're going through and I'm so thankful he's been by my side for all of the past 10 years.

Sunday, 22 January 2017

Recipe: Stuffed Acorn Squash

I haven't shared a recipe in a while so here is a stuffed squash I made this week. We had 6 squash left in our cold cellar from October and for some reason the acorn squash had started to turn yellow so we thought we should cook one. It was fine on the inside and not soft, just a bit yellower. 

It was my first time cooking an acorn squash because Isaiah doesn't like them but he wasn't at the farm on the day I bought all the squash for winter so now we have some.
Why did it suddenly start turning yellow?
I cooked the squash whole, with some salt, pepper, butter and brown sugar for a half hour because it was too cute to cut in half.
Look how tiny it is!
While that was baking, I fried up two sausages (I cut them out of the casing), onion, garlic, and spinach and mixed that in with a cup of rice, salt, pepper, oregano, and sage. 

Then I stuffed it into the squash and baked the entire thing for another 30 minutes and when the squash still wasn't completely cooked through, I cut it in half and finished baking it that way. Next time I'll just start off by halving the squash and save myself some time. It was delicious.


Sunday, 15 January 2017

Transplant Trot

I signed up for the Moncton Transplant Trot 5km today, to run it and everything! I signed Isaiah up for the 10km and I now realize it's his birthday weekend. Happy Birthday!

I hope to do better than three years ago when we participated and I walked slowly due to my inability to breathe. My goal then was to walk 5km in a hour, which I did but barely. I don't have a goal set for this year because I have no idea how fast I jog (not very) but I bet it'll be comfortably under a hour.

The Trot is at the end of April so I have time to get ready. It's to raise money for the NB Transplant Association which is a very good cause. I know Amy has used their resources to find out what is covered regarding lung transplants as a resident of NB (she's not heading to Toronto yet, just likes to be more prepared with information than I was). And the Canadian Transplant Association exists to promote organ donation which is a cause I'm 100% behind.

Since my hospital incident in Dec, which I'm calling Poopmas 2016, I've been getting back into my regular exercise program but have had to reduce everything to make up for the lost time. I'm confident I can build it back up though.

I've had fairly good success with the couch to 5km program. Well, I did until I stopped following it. I built up to jogging for 25 minutes at a time but since my 'break' I've gone back to two minute jog and one minute walk. Today I did some 5 minute spurts so I am building back up. I do find it easier psychologically to have mini breaks in between the jogging times so I'll probably stick with some variation of that rather than a solid 25 or 30 minute jog.

The program did help with offering guidelines for how much to intensity to increase each week so I would recommend it for anyone starting out. However, I had to build up for a long time to get to their "week 1" suggestion and tended to repeat weeks if I felt I wasn't ready physically to move onto the next level. So it's good as long as you're aware that the "run a 5km in 8 weeks!"claim may not be realistic. Better to go slow and not bust out your knee, which was my fear the entire time.

I know that by using our treadmill to exercise, it's a bit deceiving about my ability because it doesn't translate to real jogging. But it's so much easier than going outside or even to the exercise track at the community center so I'll stick with it for now. When it warms up again, I'll head back outside. So sometime in April. Just in time for the Transplant Trot!

Friday, 13 January 2017

I'm sure you've noticed that I'm not blogging as much as I use to. Honestly because I don't have much to say. My health life is no longer very exciting (except when it randomly is) and it seems after many years, I've moved into a somewhat boring routine stage of my life. No complaints from me, it just doesn't make for overly interesting blog posts.

So I've decided to commit to a weekly blog post. That way they'll still be some health updates, recipes, and any fun stuff I'm up to but in a more structured way.

Look for new posts on Sundays!

Wednesday, 4 January 2017

New Year Resolutions

Happy New Year! I hope everyone is recovering from their holidays. I'm still recovering from the hospital, my throat is still a bit of a mess but my nose is finally feeling better. The NG tube did a number on my throat that is taking forever to heal. For some reason rhubarb juice and club soda, while feeling nice aren't actually curing anything. But my energy is mostly back along with my appetite so things are heading in the right direction.

Since it's the start of a new year and I'm starting the year not admitted to hospital for the first time in three years, I thought I should try some New Year resolutions more than "get out of this hospital." I know concrete plans are the way to go more than just "do more stuff" or "eat healthier."

My first goal for this year is to be able to run a 5km. Well, jog a 5km. It doesn't even have to be continuous. Just be able to get my body from point A to point B in a reasonable time without falling over, and ideally, without throwing up. Isaiah wants to sign us up for the Halifax Bluenose in May (him doing 10km and me doing the 5km) so that's a reasonable goal. Even though my Christmas stint in the hospital set me back exercise-wise. It's no fair that three weeks of not exercising means you lose all muscles. Where can I send my angry letter about that?

My second goal is to create more art stuff without worrying about the end result. I think sometimes I don't do as much because I know it won't turn out the way I imagined or how the picture in the book looks. But that's ridiculous because I enjoy the process so I need to focus more on that than the end result. Who cares if the flowers I painted are lopsided or the leaves look like green blobs. It's only paper. But that's a vague goal, which I was trying not to do so instead I'll say, one afternoon a week spent on creating something. Sewing, painting, drawing, knitting, whatever, just setting aside time once a week to be crafty.

Anyway, those are my goals for this year: run a 5km and do more nonsense art.

Here's to a fantastic 2017!